Re: Helmet or no helmet?

January 11, 2008

Go visit Cranial Technologies website and read up on this groups information. We have all pretty much been in your shoes. Ped says it will round out, child has tort, is developing a flat back to one side of the head or in the back middle and the ears and eyes are not lining up anymore. Please go for a consult with the nearest cranial tech. They only do bands and pioneered the science. My son graduated on New YearS Eve after about 9 weeks in the helmet. He also has tort and goes for PT once a week. He was 4 months when we banded and it was the right choice. He was not getting better with repo and so we decided to go see a neurologist. She said it was up to us whether to band, it may round out it may not. Well, we went to cranial and with their measuring tools they found him to be 15 mm off which is moderate to severe. I truly believe if left utreated he would have facial assemitry and have a very flat back to his head.

After treatment his forehead is even and ears have really leveled out. His head is almost completely rounded with the exception of one little spot on back bottom about an 1/2 inch that may never come out. He looks 100% better than before. Band now while it is the winter. If you get the scan or casting done next week, you will be in it in 10 days and can almost be done by the warmer weather. If you do it you will need to pay upfront and then get reinbursed later. Good luck. Tammyjaimlee11 <jaimlee11@...> wrote: Hi,I was told my son had plagiocephaly at our 2 month pediatrician's visit. The pediatrician did not seem that concerned and told us, "there is not much data on use of a helmet vs. no helmet, so I wait and see if his head rounds out. Most children will round out on their own by one year of age." At our 4 month check up, I told our pediatrician I didn't feel my son's head was getting any better and I wanted a referral for a neurologist, which he gave us. Upon seeing the neurologist, he basically stated there is no prospective data on the use of a helmet and he felt there was not much difference in kids placed in helmet versus not using one. Our son is almost 5 months old now and I really don't see much change. After ready a lot of blogs from Mom's who have used the helmet, I am concerned by waiting, we are not doing the right thing. I'm also concerned that our window of opportunity is closing if we decide

to do a helmet. I really don't want to look back and feel as if I could have done something, adn didn't. Although, I don't want to place him a helmet if we see no results! I just feel so stressed out about all of this. Has anyone decided not to use the helmet and their child's head eventually became round? We live in West Chester, PA and I would also be interested in hearing on a good place to take him, if we do decide to go with a helmet. One other factor, he also has toricollis, and we are having a PT come out and do excercises with him. Our ped also seems to think this will help his flat head. But, I'm not sure if I can totally trust our ped's advice. Any suggestions would be greatly appreciated.

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January 11, 2008

Hi, Well at our 2 month appointment for our daughter I brought up that i noticed her head was a little "out of shape". She told me to start doing positional therapy and come back in a month, which we did by placing her to sleep on the opposite side. This didn't seem to help because she would always turn her head onto the other side. So after taking her back in a month she referred us to a Neurosurgeon and he did notice she too had Torticollis. He showed us exercises to do with her every time we change her diaper and referred us to a place who specializes in the Starband helmets....he said she did have plagio as well. After having a consultation with the helmet place we were so comforted to know a lot of children go through this and it is fixable! After doing a scan we could definitely see that other parts of her head were being effected such as her forhead was starting to bulge and her ears were slightly

starting to be uneven...I believe that even if it's just a "cosmetic" issue and even if nothing else such as TMJ or inner ear problems (which there is not really any data to state would happen, just basically hypothetical) who wants there baby to have an uneven head or other slightly odd features? After going through our insurance we went to a place that we knew we didn't feel comfortable with and so we decided to go back to the place the neurosurgeon suggested (they didn't take our insurance) so we paid out of pocket to have the helmet made knowing we felt very comfortable with the process and company and knowing it would benefit in the long run. She just got the helmet at 4 months and 3 weeks of age and I do know that the window of opportunity starts to close as there head growth slows down which essentially will make them have to wear the helmet for longer to fix the issue, only because the head is growing slower, but it can still be fixed all the way

up to like 18 months or so. I am grateful that the doctors we went too didn't push us off as "it will go back" because even in as little time as a month it was rescanned and had gotten worse, even though we knew her Turtocollis was MUCH better. So my suggestion is to pursue what you as a mom feel in your gut. Some doctors just may not have had too much experience with it and others do. I do not live in PA but in CA so I can not suggest a place, but I can tell you that I am glad with the choice my husband and I have made for our daughter and know that it will get better. I do trust our Neurosurgeon who is from Children's Hospital LA, as well as the Prosthetics and Orthotist who we are seeing, who specializes in Starband helmets. Don't be too stressed, as my doctors Say's "it's not life support, it is just making something that is alittle off in shape that much better." Hope

this helps, let me know if you have any questions.....don't worry. jaimlee11 <jaimlee11@...> wrote: Hi,I was told my son had plagiocephaly at our 2 month pediatrician's visit. The pediatrician did not seem that concerned and told us, "there is not much data on use of a helmet vs. no helmet, so I wait and see if his head rounds out. Most children will round out on their own by one year of age." At our 4 month check up, I told our pediatrician I didn't feel my son's head was

getting any better and I wanted a referral for a neurologist, which he gave us. Upon seeing the neurologist, he basically stated there is no prospective data on the use of a helmet and he felt there was not much difference in kids placed in helmet versus not using one. Our son is almost 5 months old now and I really don't see much change. After ready a lot of blogs from Mom's who have used the helmet, I am concerned by waiting, we are not doing the right thing. I'm also concerned that our window of opportunity is closing if we decide to do a helmet. I really don't want to look back and feel as if I could have done something, adn didn't. Although, I don't want to place him a helmet if we see no results! I just feel so stressed out about all of this. Has anyone decided not to use the helmet and their child's head eventually became round? We live in West Chester, PA and I would also be interested in hearing on a good

place to take him, if we do decide to go with a helmet. One other factor, he also has toricollis, and we are having a PT come out and do excercises with him. Our ped also seems to think this will help his flat head. But, I'm not sure if I can totally trust our ped's advice. Any suggestions would be greatly appreciated.

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January 11, 2008

Hi there! Our story is similar so I'll give you the brief version. Our daughter has Right Occipital Plagiocephaly. Her assymetry was 12mm. She was banded at 5.5months and we have had great results after having it on for 7 weeks. She will graduate January 24th for a total of 9 weeks of wear and she will be measured again at that point. I will tell you that it is on at all times, we have been 100% compliant. The time really does fly by and we are so excited to be coming down the home stretch. I would definitely do it all over again and really feel it was worth it! Good luck! Kari Duffy <klduffy2002@...> wrote: Hi, Well at our 2 month appointment for our daughter I brought up that i noticed her head was a little "out of shape". She told me to start doing positional therapy and come back in a month, which we did by placing her to sleep on the opposite side. This didn't seem to help because she would always turn her head onto the other side. So after taking her back in a month she referred us to a Neurosurgeon and he did notice she too had Torticollis. He showed us exercises to do with her every time we change her diaper and referred us to a place who specializes in the Starband helmets....he said she did have plagio as well. After having a consultation with the helmet place we were so comforted to know a lot of children go through this

and it is fixable! After doing a scan we could definitely see that other parts of her head were being effected such as her forhead was starting to bulge and her ears were slightly starting to be uneven...I believe that even if it's just a "cosmetic" issue and even if nothing else such as TMJ or inner ear problems (which there is not really any data to state would happen, just basically hypothetical) who wants there baby to have an uneven head or other slightly odd features? After going through our insurance we went to a place that we knew we didn't feel comfortable with and so we decided to go back to the place the neurosurgeon suggested (they didn't take our insurance) so we paid out of pocket to have the helmet made knowing we felt very comfortable with the process and company and knowing it would benefit in the long run. She just got the helmet at 4 months and 3 weeks of age and I do know that the window of opportunity starts to close as there

head growth slows down which essentially will make them have to wear the helmet for longer to fix the issue, only because the head is growing slower, but it can still be fixed all the way up to like 18 months or so. I am grateful that the doctors we went too didn't push us off as "it will go back" because even in as little time as a month it was rescanned and had gotten worse, even though we knew her Turtocollis was MUCH better. So my suggestion is to pursue what you as a mom feel in your gut. Some doctors just may not have had too much experience with it and others do. I do not live in PA but in CA so I can not suggest a place, but I can tell you that I am glad with the choice my husband and I have made for our daughter and know that it will get better. I do trust our Neurosurgeon who is from Children's Hospital LA, as well as the Prosthetics and Orthotist who we are seeing, who specializes in Starband helmets.

Don't be too stressed, as my doctors Say's "it's not life support, it is just making something that is alittle off in shape that much better." Hope this helps, let me know if you have any questions.....don't worry. jaimlee11 <jaimlee11 > wrote: Hi,I was told my son had plagiocephaly at our 2 month pediatrician's visit. The pediatrician did not seem that concerned and told us, "there is not much data on use of a helmet vs. no helmet, so I wait and see if his head rounds out. Most children will round out on their own by one year of age." At our 4 month check up, I told our pediatrician I didn't feel my son's head was getting any better and I wanted a referral for a neurologist, which he gave us. Upon seeing the neurologist,

he basically stated there is no prospective data on the use of a helmet and he felt there was not much difference in kids placed in helmet versus not using one. Our son is almost 5 months old now and I really don't see much change. After ready a lot of blogs from Mom's who have used the helmet, I am concerned by waiting, we are not doing the right thing. I'm also concerned that our window of opportunity is closing if we decide to do a helmet. I really don't want to look back and feel as if I could have done something, adn didn't. Although, I don't want to place him a helmet if we see no results! I just feel so stressed out about all of this. Has anyone decided not to use the helmet and their child's head eventually became round? We live in West Chester, PA and I would also be interested in hearing on a good place to take him, if we do decide to go with a helmet. One other factor, he also has toricollis, and we are

having a PT come out and do excercises with him. Our ped also seems to think this will help his flat head. But, I'm not sure if I can totally trust our ped's advice. Any suggestions would be greatly appreciated. Never miss a thing. Make your homepage.

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January 11, 2008

Hi,Your situation sounds similar to ours. Our daughter's pediatrician said her head would 'round out on it's own' at her 2, 4, and 6 month check ups. It just seemed to be getting worse and people were starting to comment on her mis-shapened head. So, we did some research and went ahead and took her to an Orthosist without a referral. When we first went in while she was five months, the flat spot was 2.5cm off. She got her helmet at 7months and is now 8.5months and she's only .5cm off a normal head. So, between 5 and 7 months we saw no change at all, and within a month and a half, she's nearly normal. We don't know if her head would have rounded out on it's own, but we have no regrets. She will probably take the helmet off in a month and only wear it when sleeping (because she still lies on the flat side).

On Jan 11, 2008 7:19 AM, jaimlee11 <jaimlee11@...> wrote:

Hi,

I was told my son had plagiocephaly at our 2 month pediatrician's

visit. The pediatrician did not seem that concerned and told

us, " there is not much data on use of a helmet vs. no helmet, so I

wait and see if his head rounds out. Most children will round out on

their own by one year of age. " At our 4 month check up, I told our

pediatrician I didn't feel my son's head was getting any better and

I wanted a referral for a neurologist, which he gave us. Upon seeing

the neurologist, he basically stated there is no prospective data on

the use of a helmet and he felt there was not much difference in

kids placed in helmet versus not using one. Our son is almost 5

months old now and I really don't see much change. After ready a lot

of blogs from Mom's who have used the helmet, I am concerned by

waiting, we are not doing the right thing. I'm also concerned that

our window of opportunity is closing if we decide to do a helmet. I

really don't want to look back and feel as if I could have done

something, adn didn't. Although, I don't want to place him a helmet

if we see no results! I just feel so stressed out about all of this.

Has anyone decided not to use the helmet and their child's head

eventually became round? We live in West Chester, PA and I would

also be interested in hearing on a good place to take him, if we do

decide to go with a helmet. One other factor, he also has

toricollis, and we are having a PT come out and do excercises with

him. Our ped also seems to think this will help his flat head. But,

I'm not sure if I can totally trust our ped's advice. Any

suggestions would be greatly appreciated.

January 11, 2008

There is a group on for older kids with plagio. They can probably give you better insight for kids with out treatment.

OlderPlag/

Jen and Luli - 24 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

Helmet or no helmet?

Hi,

I was told my son had plagiocephaly at our 2 month pediatrician's

visit. The pediatrician did not seem that concerned and told

us, "there is not much data on use of a helmet vs. no helmet, so I

wait and see if his head rounds out. Most children will round out on

their own by one year of age." At our 4 month check up, I told our